Updates on Laurel: October 2001

I'm mostly sorry I went on vacation... (yes, it's long and whiny)

There were a couple of saving graces. One major one was that, when I was getting the tour books out to pick out a restaurant for dinner, Bob suggested I get my ID and our birth certificates out of my backpack since we'd be crossing the border after dinner, and I did so. So my driver's license and some (but not all) of my credit cards were in my pocket, and our birth certificates were lying on the floor of the car in a nondescript envelope and weren't bothered. So at least we were able to cross the border with no problem. The other thing is that they apparently didn't have time to get into the trunk, so our clothes and most importantly, Laurel's medicine (except for her reflux medicine, which had been in the cooler :-( ) and specialty formula and feeding equipment were still there.

By the time we got done with the police and waited through the long line at the border and finally got to our hotel in Seattle, we got to bed about 4 AM. Then up about 3 hours later so we could get to the rental office bright and early to return the damaged car, and wait in line for 2 1/2 hours at the airport only to be told that our flight had been delayed and we were going to miss our connection and we'd have to take the redeye. We did talk the airline into giving us a hotel room for the day, so we went and crashed for as long as Laurel would let us. Laurel actually slept OK on the plane as long as one of us was holding her, but we didn't. So you can imagine what kind of shape we were in by the time we had to make the 3-hour drive home from the airport. But we made it, somehow.

I spent all day yesterday running around trying to replace things that had been stolen (I've just barely scratched the surface - but I did manage to get another fleece outfit, although I had to settle for a different color and buy the jacket locally and the pants online) and making a list of exactly what was stolen and calling the insurance and credit cards. I'm back at work today, but obviously not doing a very good job of concentrating (it's not helping that for some reason I can't download my e-mail, and until I can, I won't be able to do most of what I have to do).

So, other than that, how did you enjoy the play, Mrs. Lincoln? Well, as I wrote in the update I posted to the board while we were gone, Laurel had an ear infection for the first part of the trip. So she screamed and barfed her way through most of Washington state. Although I was in a pretty decent mood when I posted the update, because at least at that point she was starting to feel a little better, and because relief was on the horizon in the form of my sister, who we were meeting in Victoria. Victoria went pretty well, although of course Bob was in a conference most of the time we were there so I had a better time than he did! I think by that time, though, he was just happy to have a few days off from the screaming baby. Things went somewhat downhill again when we had to stick Laurel back in her carseat and go - she was having terrible gas pains again (she's been doing that a lot lately anyway, but I don't think the antibiotics for the ear infection helped in that way, and they gave her diarrhea too) and they seemed to be worse when she was in her carseat. Although I will say that upisland from Victoria is really beautiful, and we stayed in this wonderful suite with a fabulous view of the Strait of Georgia for about the same price as a regular hotel room in a lot of other places. But I was already feeling ready for the trip to end (not usual for me, I usually hate going back and feel like I could just stay on vacation forever) by the time we got to Vancouver.

So there's my novel. I'm even more tired now than when I went on vacation, and I'm just sick over the things I lost and the fate they came to, so for the first time in my life, I'm actually regretting going on vacation. I need a vacation to recover from my vacation, but I don't see a fairy godmother landing to grant me one. I guess I should suck it up and just, as the cop said in Vancouver, be grateful that we weren't hurt.

Better go figure out why my e-mail isn't downloading...

I have been so depressed lately...I think it's because Laurel's first birthday is coming up.

We are worn out beyond belief, between the ordinary stresses of having a cranky baby who won't sleep through the night and the bigger-picture stresses of her being so far behind developmentally. Not to mention the stresses of being behind at work and falling behind financially. We just made the decision to cut our pledge to our church substantially, and I know they'll understand, but I still feel bad. I feel bad about all the money we spent on our vacation - I'd hoped it would make me feel better and be worth it, but it wasn't. I think the stress is putting a strain on our marriage, too. I've heard that divorce rates of parents with special-needs kids are astronomical, and I can understand why. I feel like we often snipe at each other, but we're too tired to either really fight or really do anything to fix it, either. We haven't felt close since I don't know when, and I'm not going to admit when the last time we had sex was. I think we both wish we could have another baby, but I can't imagine how I could do it and stay sane, I feel like I'm close to the brink the way it is. I could probably use counseling, but I don't feel like we have the money - it would only be covered 50% by our insurance.

I'm sorry to whine at you guys again - I know I've whined so many times before. I guess I hoped that either Laurel would be better, or I'd be better adjusted, by now. I'm not sure how much longer I can keep on keeping on...

[This and the following message are answers to questions I received after the previous post]

She doesn't qualify for any further services at this point, although we have recently lined up an educational specialist to visit once a month, and yesterday she was evaluated by someone from the state Dept for the Blind and Visually Impaired (I didn't really have the guts to ask what she thought - it was clear that Laurel wasn't looking at too many of the things she offered. She did say that it was clear to her that Laurel has a classic case of cortical vision impairment) who can come out a few times a year. When Laurel's two, we have the choice of either continuing with early intervention or putting her in a part-time preschool for special needs kids that's run by the school district. (When she's three, it stops being a choice, and she goes to the preschool.) But for right now, we are limited to the early intervention program as far as free/low cost (we have to pay for the educational specialist) therapy goes. 

October 16, 2001 (1:36 PM)

One more thing, for the record and because I forgot to mention this in my original whine - she's not getting OT, but feeding therapy - which used to be with an occupational therapist, but now is with a speech therapist. Not that it matters, she hasn't made any real progress in ages. She takes maybe one teaspoon of juice by mouth and, on a REALLY good day, a couple of tablespoons of baby food, although more typically it's more like a couple of teaspoons. So we are still tube-feeding her 5x a day (we do 3 of the 5 on the 3 days she goes to the babysitter) and still taking over an hour per feeding. It takes 40 minutes to actually feed her (we always do it with her sitting on our laps, while we usually first do some feeding therapy and then try to play with her and offer her some stimulation, assuming she isn't asleep), 20-30 minutes to make sure she doesn't throw up (which she still does a couple of times a week, a lot better than it used to be but still enough to not feel too secure), plus the time to set up and clean up (the 11 pm one is the worst, it usually takes me almost half an hour to set up because of all the meds I have to measure). Ugh, I think I've found another reason I'm so tired....

Update on me, and a response to one of the suggestions I got yesterday...

An update on me...

For the career counseling, she referred me to a career center. I still need to call them.

For the personal counseling, she went to talk to their counselors to see if one would be particularly suitable to talk to me. It turns out one of them has a 14-year-old with cerebral palsy! I got off the phone with her a while ago, and I'm supposed to meet her on Tuesday (I *think* this meeting is going to be free), and she's supposed to tell me what she's learned about resources in our area. So hopefully maybe this will help. :-)

Also wanted to tell you guys that we've decided to get another cat! We would really like both another cat and another baby, but we've said on both that we're worried we don't have the time. We decided to start with the cat and see how it goes. ;-) We'll probably get an adult from a shelter, not sure when though since we're already pretty booked for this weekend. We're going to an amusement park (King's Dominion) on Sunday (something I had to arrange a month and a half ago! Unfortunately, the people willing to babysit for us are busy folk :-( ) and I'm *so* looking forward to it! The weather is supposed to be sunny and in the low 70s, and I've reconfirmed with the babysitters. Keep your fingers crossed that this time we make it!

So there's my update, it was supposed to be short, but if it were short, it would be written by somebody else. ;-) Thanks again for your support and suggestions!

I think we're going to have to stop going to the gym - Laurel has her 3rd cold since we started using their daycare! We joined in the end of July and usually go right after we pick Laurel up from the babysitter's. We thought this was a great idea, b/c she usually naps then anyway. But, where she had had one cold up to that point, now it seems like she spends half her time being sick! We've been through three colds and an ear infection. Problem is, we just don't have the time to take turns going. But I just don't feel right having her be sick so much so I can do something that's basically a luxury (unlike, say, working). Wah, believe it or not, I like going to the gym (and could really use the exercise, I don't get any otherwise), so I'm pretty bummed about this.

So now Bob's mad at me. Perfect, I have a sneezing, coughing, whining, barfing baby AND an angry husband. I guess we're going to settle the fight by asking the pediatrician what we should do, but she won't be in until Wednesday. I know other people are having worse days, but I just felt a need for my own little glass of whine... :-(

Oh, SPIFFY. The little knob on Laurel's "button" that closes it when there isn't a tube attached has broken off. Guess this means a trip to the hospital tomorrow and 15 minutes of hell for Miss Laurel (they yank these things out and put them in without anesthesia). Like the poor little sick kid isn't miserable enough. Meanwhile we're trying to keep it closed up by leaving the tube in - real fun when another on the limited list of things Laurel can do with her hands is pull her tube out...joy, joy...

Well, it turns out we can't get Laurel in for her button until Friday. And that after I hollered and screamed (because they were talking about next week, or maybe the week after that) and was informed that "most parents are RESOURCEFUL and don't mind waiting until we can fit them in." Meanwhile, we've been told to tie a knot in a tube, cut it short and keep the hole plugged with that. We just did that, so we'll see how it goes. Maybe she'll be feeling a little better by Friday, anyway, but the downside of the time they gave us (9:45) is that (since she has to have not eaten for 4 hours before the procedure) either we'll have to get up in the middle of the night to feed her, or we'll have a very hungry baby! She has to have a blood draw Friday morning, too, at 9 AM to check her seizure med levels - I hope we can make it! :-(

Thanks for the hugs - please think of us (and especially poor Laurel, who is going to have a HORRID morning) on Friday!

[Posted by Bob]

Thanks for thinking of us...everything went fine and the pain was brief.

Poor Laurel is so exhausted, though. I had to get up and feed her at 5 this morning so that her tummy could be empty by 10 when her button was changed. So, she woke up then. And then she couldn't get back to sleep afterwards. She finally got dozy just about the time we had to change her clothes and leave to have her blood drawn (that the was the other procedure this morning - she needed some blood drawn to check the level of anti-seizure medication). She cried most of the way there (she was pretty tired by that point). She got dozy just as we sat down and the vampire poked her. She's pretty good about that, though. She really only cries right when the needle goes in and for a few seconds afterwards. She cried most of the way to doctor's office where her button was changed. She had just calmed down and was falling asleep when the doc finally showed up to make the change. The whole thing probably lasted less than a minute. More time is spent taking off her clothes and putting some gauze around the replaced button after its all over than is actually spent yanking out the button. But it sure must be painful. The poor sweetie cried for quite a while after that, but by the time we left the building for the car, she was mostly asleep and when I dropped her off at the sitters, she was completely out. I hope she manages to get a good long nap today. I told the sitter to give her some tylenol with her next feeding. But, since she had to have an empty stomach, any tylenol we could have given her earlier in the morning would have been mostly out of her system by then. And it really does happen pretty quickly.

Again, thanks for thinking of Laurel this morning.